I have had shortness of breath issues for quite some time. I had a heart ultrasound and pulmonary function test. The ultrasound showed thickening and stiffening of the left ventricle. The pulmonary test shows results common in asthma and copd. I am asthmatic. I was a smoker off and on but never smoked more than 10 cigs a day. I quit for years when I was pregnant and my daughter was little. I am not diabetic. I do not have high cholesterol. I am shocked with this diagnosis so I just wonder if having an MPN could be the cause. I have had high platelets for 25 years and was only diagnosed a year ago with ET but my new Doctor is tending towards PV.
I am 62. By the way, the pulmonary dr totally blew off my MPN. Like it was nothing! This kind of reaction from a Dr just triggers me! I want to punch them! I won’t do it but I want to!
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Wewo01
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No punching your doctors no matter how much they deserve it! It is OK to hit them with a stick. Or give them a dope slap to the back of the head. 😡
Actually educating them about MPNs is what we often have to do. Many are unfamiliar with MPNs due o their rarity. My new orthopedist just flat out told me it had been a long time since medical school and asked what PV was. I briefly explained it and how the overproduction of inflammatory cytokines was relevant. I really like that doc!
It sounds like you are describing ventricular hypertrophy. The heart is a muscle and when something makes it work harder it gets bigger. mayoclinic.org/diseases-con...
This is associated with high blood pressure amongst other things. If you are positive for PV I would wonder whether if hyperviscosity of the blood could play a role. Having your blood too thick could cause high blood pressure and/or make your heart work harder.
I did a quick search and found a couple of relevant references. There are more out there. Just search "ventricular hypertrophy polycythemia" and you will see it. Here are a couple of relevant articles.
The above is just conjecture on my part. There is no way to know yet about any connection. I would agree with your thought that the MPN may play a role. Even if "unrelated" - having a cardiac condition in addition to a MPN is a risk factor that needs to be considered. This is an issue that needs to be reviewed with a MPN Specialist.
You really need the MPN Specialist to weigh in ASAP and consult with the cardiologist. It is often up to you to ensure that your care team collaborates. You need to be your own care manager. You may recall that I have had heart, brain and jaw surgeries in the last couple of years. I learned the hard way from a previous surgery just how bad the outcome can be if you do not insist on collaboration across your entire care team.
I hope you get this all sorted out ASAP. Please do let us know what you learn.
I was diagnosed with ET 5 years ago, and put on hydroxy, after 6 months I was experiencing extreme fatigue , after about 3 months was was changed to anagrilide, but the fatigue continued, and the my GP found I had AF ( which is a known side effect of Hydroxy ) so have been on cardio drugs ever since, and had several cardioversions, but still had some fatigue episodes. however after some Dr Google searches realised magnesium deficiency could be due to the medications, so have been taking magnesium supplements, and fatigue has been much less.
Hi, sorry to learn about your current circumstances, a new diagnosis always leads to shock and disbelief. I am curious to know how your high platelet count went undiagnosed for 25 years. I was diagnosed with ET about 18 months ago when a routine health check flagged up slightly raised platelet count, my GP was onto it like a shot and referred me to haematology. Hope you don't mind me asking.
My platelets ran between 498 up to 600. My Dr said nothing to worry about. That was in May of 2000. So 21 years. My HCT went above 45 at least 10 years ago and stays between 47 and 48. White blood cells have been running in the 12 to 16 range for 10 years.
Unbelievable, it is another example of 'having to watch our own backs'. I know we also get a lot of criticism for trawling the internet but at least in furnishes us with some knowledge which we can use when we go to see our doctors. Thanks for that information.
These are good examples of whether your Dr is paying attention. I started to increase PLT
8 years ago, at 645 by 2016. But they didn't find it actionable. Only last year when it got to 1100 and I felt ready for the ER did he get interested and suggest a referral.
The flip side was my old GP who 30 years ago called me from the airport to tell me I needed to go to see a hematologist ASAP. He apparently got my labs at the last minute when he was on his way out of town. My platelet count was in the mid 800's at the time. I was totally asymptomatic, just a routine CBC.
As others have just stated, we do have to become educated so we can be effective advocates. It is often necessary to educate providers and push to receive the care we need.
My mom had a hardened left ventricle wall. She then took heart support. It wasn’t the real problem though. It was a 40 year untreated Hashimoto and 30yr old Hepatitis that lead to liver problems, autoimmune hepatitis and her whole organism eventually broke down.
You should find the true root cause of this condition and get diagnosis from really good, caring doctors who think out of the box (also from a good functional doctor). This is the most important step.
I take Anagrelid and have had heart problems with that, but have finally managed to keep that and my general ET weakness beautifully managed by taking 1500mg of Acetyl L-Carnitine daily. 3-500mg capsules. Not in the evening. A really good natural Magnesium 150mg am and 150mg pm (helps all muscles work better) and Vit. D (take enough to get to 80 on your blood test) are so important!
Keep blood thin, support stocking help the heart so well if you have any vein problems or tired legs. Reducing salt takes pressure off the heart also.
There so much you can do aside conventional medicine. Make sure your digestion is also moving well. Eat lots of veggies, reduce carbs, get only organic animal proteins, not too much.
We always get a shock at every diagnosis, then we learn and live for our health. 😁
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Had f/u with Hematologist 
I was diagnosed with PV in 2016 and live in North Yorkshire
Diagnosis update - PV - in limbo 
what to think? 
Newly diagnosed with ET jak2+ and just looking for reassurance 
